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1:25 risk for Downs

(22 Posts)
Ginny1234 Tue 13-Aug-19 15:43:09

Hi there,

I've had my results back today and just wanted help putting it in to perspective if anyone knows about these things. As far as I can tell, my blood and NT results are within the normal range:

Hcg: 2.04
PappA: 1.43
Nt: 2.7mm
T18/13 combined risk 1:1000

But I'm 41 (41.9 at EDD) so my risk for my age only would be 1:60.

I was expecting the high risk at 1:60 but not for it to be worse.

Does anyone have any similar experience- please don't put sugar on it, I just need facts! X

MajorFaffington Tue 13-Aug-19 18:13:37

Sorry you are experiencing this. I have been through similar so I have an idea how you might be feeling.

I had a 1:72 chance at 32 with bHCG of 4, PAPP-A of 0.6 and NT of 2. I had NIPT which came back “Highly unlikely” for all trisomies.

What is making your odds higher than the 1:60 background chance for your age is the NT measurement at the higher end of the normal range and a high bHCG level (still only half what mine was though!).

However, with Down’s syndrome, the PAPP-A level is often significantly lower than average, whilst yours is above average, which is reassuring.

The combined test does give a lot of false positives and this is more common the older you are.

Are you going to have a NIPT/CVS/amnio?

FoxtrotSkarloey Tue 13-Aug-19 18:24:49

Hi OP, I'm sorry I can't remember the details on the numbers, but I was able to speak to a genetic counsellor before having the NIPT test and she was able to talk me through it very thoroughly. Perhaps your hospital has the same?

EggysMom Tue 13-Aug-19 18:31:21

1:5 risk of Downs when carrying DS at age 39, ten years ago so before nuchal measurements and NIPT, we declined amnio. He was born 11wk premature and has a huge variety of issues but Downs isn't one of them smile

LadyGAgain Tue 13-Aug-19 18:37:55

thanks sorry you're going through this. I had similar. Would you consider paying for the harmony test. I had decided that I would continue with the pregnancy regardless but I wanted to ensure we were educated and prepared should our child have additional needs or challenges.

AbbyNormal Tue 13-Aug-19 18:44:40

Sorry you're going through this OP thanks

Hcg: 2.04
PappA: 1.43

"Normal" range is around 1.0 for both of these so that is probably what's giving you those odds, but as mentioned further up PappA is usually lower with Downs Syndrome. My PappA with DD was 0.88 and the NT measurement was 4mm. I was 29 at the time and was given odds of 1 in 49 for Downs. I was offered the Harmony test via NHS and everything came back all clear. DD was born healthy and there seems to be no rhyme or reason to the results I had. The combined screening can be very inaccurate. Does your hospital trust offer NIPT testing? It's worth paying for if not. There's also CVS and Amino to consider.

Ginny1234 Tue 13-Aug-19 18:47:00

Thank you all for replying, your input is all really helpful.
@MajorFaffington - do you know what the normal range is for Hcg? I had weekly Hcg injections for the first trimester and the last one was 6 days before my bloods were taken so I think it's not unreasonable to assume my levels would be slightly higher because of that, since the injections are supposed to last 7 days.

I've booked the NIPT test for Saturday morning but that means there's likely to be three weeks before I get those results so just want to figure out how I feel about it in the meantime.

My husband and I discussed what we would do before the test and we're happy to go ahead with the pregnancy and will love the little monkey whatever happens but I guess I just want to know what to prepare for.

MajorFaffington Tue 13-Aug-19 21:44:40

The bHCG and PAPP-A figures are expressed as “multiples of median”, or how many times the average result for your gestation. Results should be as close to 1 as possible to show an average/normal result. This means that your bHCG is double the average and your PAPP-A is about 1.5 times the average.

I can imagine that the HCG injections may well affect your results, do you know if this was considered in the calculation? I know they ask various questions about whether you have had fertility treatment or have diabetes etc as these things can affect your results. I would discuss with your midwife and see what she says about that.

Ginny1234 Tue 13-Aug-19 22:31:39

Thanks for that @MajorFaffington I'm just googling to try and find out if the bhcg detected is the same as the presumably synthetic injections because if not I'm guessing it wouldn't be detectable in the test. But if it is, I just read that my 10,000 IU injections are still detectable in bloods up to 14 days late - but it was referring to when thanking HPTs so low levels of detection I guess.
I did mention it to the midwife but she didn't seem to know if it would have and impact on the results. They didn't ask me at the scan and I didn't think to tell them so it won't have been factored in.
I'm having the NIPT in Saturday anyway so I guess it doesn't really matter, I just have a science brain that wants to know everything and if I'm kidding myself with false hope or not,

MajorFaffington Wed 14-Aug-19 16:21:57

Same here with the science mind, but I can’t seem to find anything about the injections and bHCG.

Good luck with the NIPT, come back and update us when you can x

Ginny1234 Wed 14-Aug-19 18:38:58

Thank you, will do xx

Ginny1234 Sun 18-Aug-19 18:52:25

So I had the NIPT scan today and everything looked perfect. Nasal bone present and everything else growing as it should be. The sonographer, it turns out, is this amazingly experienced woman called Judith Pilling, who had helped develop the NHS triple test that they sold to the NHS so she knew loads of stuff and I took the opportunity to pick her brain.
I told her my blood results and she basically said what I had been thinking, that they were all within the normal range except high HCG but with me having a HCG injection 6 days before she thought that was why it was out of the normal range. She said that before the scan and that she wasn't worried at all then but would wait to see the scan before she gave her option. After the scan she said she's not worried at all and thinks the baby looks perfectly normal and thought the blood results would confirm that.
Just 10 days to wait to be sure but I'm feeling pretty reassured already.

It was at Leeds This Is My clinic if anyone else wants to have the same expertise. £350.

MajorFaffington Sun 18-Aug-19 19:33:22

Great news and great care! Thanks for updating us x

tisonlymeagain Mon 19-Aug-19 13:13:18

Great you are feeing more reassured.

Just to let you know, I had the Harmony done on a Saturday and my results were back a week later on the following Monday, so it was only a week to wait. Hopefully it won't be too long for you.

Ginny1234 Thu 29-Aug-19 03:38:40

Update:

So we got the results today and it's all low risk!

From 1:25 NHS Triple test to NIPT results of...

Trisomy 21: Low risk probability 1 in 1088771
Trisomy 18: Low risk probability 1 in 159315
Trisomy 13: Low risk probability 1 in 48420705

Quite a difference so I'm glad we went for the testing. We also found out we're having a little baby boy 😊

VLCDoingIt Thu 29-Aug-19 04:30:13

Congratulations!

MajorFaffington Thu 29-Aug-19 09:20:43

Fantastic news! X

RP140 Sat 31-Aug-19 07:12:26

Hi,
I have found your stories very comforting thank you. I went for my 12 week scan on Wednesday, I was going to have the combined test but baby had a nuchal fold measurement of 3.3. I was basically made to feel I had to have it. Yesterday I got the results 1/25 for downs. Low risk for the other two. I'm 32, HCG 1.07, PAPP 0.92 and the NT of 3.3. I've booked in to do the Harmony test. I'm grateful that I'm low risk for the other two but I am so scared. I just want to talk to other people in a similar situation or have been in a similar situation to me. How inaccurate are these measurements, I find it hard to believe the fold can be measured accurately considered my baby was doing back flips at the time. I would be really grateful for any thoughts or advice. Thank you

Ginny1234 Sat 31-Aug-19 10:02:32

Hiya @RP140,

Your results seem better than mine and you're much younger than me too so I'd say not to worry too much because I don't think you're 1:25 risk is realistic from my experience/reading the last month or so. Obviously I'm not a medical professional but what I've learnt is:
Pappa and Hcg levels should be as close to 1 as possible (so your levels look great to me) NT levels are perfectly normal below 3.5 and my sonographers (two different ones) both told me that they've had people with up to 5 and 6 who have had perfectly healthy babies. You're also right to think that it's very difficult for them to get an accurate measurement - that's why, even though they're experts, they take several measurements and use the highest. But as you say, baby position changes slightly so the perspective can skew the measurements easily making it both higher or lower.
Both the scan and the combination of bloods combined with the algorithm is not n exact science. It's simple a oil used by the hospitals to help them focus their limited resources on the people who are given the higher probability of needing it.
Most papers I have read by medical professionals and researchers have acknowledged the significant margins of error and they argue the benefit against the down side of worrying parents unnecessarily.
My advice would be to go for the NIPT test if you can afford it, simply because it's given us peace of mind. But if you decide not to then my instinct is that your baby is fine.
Remember my results went from 1:25 NHS to more than 1: million NIPT - that's a polarised, extreme difference so doubting the validity of you nhs results is you being in denial or neurotic or whatever, it's obvious, scientifically supported and very sensible.

I hope that helps and you can maybe not worry so much ...but I know you will anyway!!!

Ginny1234 Sat 31-Aug-19 10:05:20

..should say NOT you being in denial!!

HugoAvril Sat 31-Aug-19 10:07:55

I was given 1:25 too 3 years ago, age 38. My little girl was born perfectly healthy.

RP140 Sat 31-Aug-19 11:15:41

Thank you ladies. I really appreciate your replies and your comforting comments. Just going to try very hard not to think about it and hope that Wednesday goes well then I get low risk test results like you ladies. Thank you. X

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